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mplocki

Career And Pots

Careers and POTS  

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My son is 16 w/ POTS and is having a difficult time envisioning how he is going to manage a life. Please share your successes with coping with career/work and POTS.

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When I was very sick I was unable to work but as I got better I went back part-time. I have been full time for 8 years since.

I think one thing to keep in mind is that most people do get better eventually, esp young people.

That said, I would add that as I was getting better having a job where I could sit down when I needed to, have access to food and water as needed, really helped.

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That is a huge challenge. Right now, I do a lot of work from home, mainly computer-based work. If your son is interested in computer-based work, there are lots of great training options at lynda.com.

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I'm 21 years old and currently in college for Social Work. When I was diagnosed with pots in 2014 I didn't think I'd ever be able to go back to college nor would I be able to do any kind of career with it. One day I randomly decided that I didn't want to do all classes online (as I was considering doing this and just getting an easier degree from one of the online colleges). So, I applied to transfer to another university that wasn't just a two year. I got in and it kickstarted an entirely different path than I'd ever thought possible for me.

I'm currently working part time at my school's alumni center and I do front desk work. I sit down the entire time and only get up occasionally. It literally just fell into place for me, as I had walked in inquiring about another job but she offered me a position there. I also do some classes online and some classes in person so that if I'm having a particularly bad POTS day, I can work on my online classes if I cannot make it into my actual class. I also have the disability center helping me out as well as DVR services. I would HIGHLY recommend trying for DVR (or whatever it may be called in your state. Mine is Department for Vocational Rehabilitation) too, as they'll help pay for school as well as help put you in touch with careers you can do with any limitations you may be experiencing in that point of time.

I am well on my way to being able to have a career in my field of choice and also know that I have resources who can help me. I'm doing really well so far and pulling A's and B's in my classes right now. (:

So, to make a long story short, it is entirely possible. It may take a little while to find the right combination but it will fall into place.

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I have been very fortunate with my job situation. I have a desk job, so I am sitting down the majority of the day. My boss and coworkers are very understanding of my situation. If I need to take a break, they are totally okay with it. They make sure to stay on me about eating enough salt and drinking enough water. If I am not feeling well, my boss will gladly send me home (sometimes without docking my time). The most important thing is getting somewhere with a strong support system. Teamwork is so important. I can't imagine going through this diagnosis process in another job with people who are not as understanding.

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I work as an analyst and my efficiency at work has decreased much due to episodes of lightheadedness, migraine and weakness.Folks at work are mostly understanding and I have flexible timings which helps a lot. one aspect which people at work 100% don't get is the variation with this syndrome. If I am having a good week and produce a lot then they think everything is resolved and are surprised when the next time I am having a bad week and can't be as productive.

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I had to quit my PhD in 2011 due to brain fog, excessive fatigue, and adrenaline surges and fainting spells. I worked part-time from home as a research assistant for several months, then added another part-time online job. These days I work three part-time jobs: one in an office 20 hours a week, and two from home/online. I tried to do a full-time office job last summer but failed miserably from the stress and fluorescent lighting. I've given up on my dream career of becoming a research professor because I have neither the mental capacity nor stamina to pursue it anymore. I'm overqualified and underpaid for all of the jobs I do now, but I am grateful that I have them. They still leave me feeling exhausted, but for the most part I'm able to handle it and I can rearrange my schedule to some extent when need be.

The office job I do is in a law office. I think the legal field is a good option as long as it isn't in a high-stress firm (like litigation).

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I have a few part-time jobs, but it looks like I'm going to lose all of them. On top of that, I have two college degrees that I can't use, and I'm no longer transferring to prep for the job of my dreams. I think the college I chose is built for the healthy and wealthy. Also, I'd have to have someone take me to classes in a wheelchair. A career is looking more and more impossible.

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I have been struggling lately whether or not pursue teaching as a career with mild POTS as well as Sjogren's Syndrome. I am in the second year of my licensure program. This semester I have been researching teaching with a disability, as well as working as a teaching assistant. I want to teach at the high school level.

Currently, I believe that I can teach, if I find the right school and setting. But I have days when I do not not think so. At this point I am going to take it one day at a time. Online teaching is becoming more and more common, and I may transition to that in time.

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I'm a music teacher (violin/piano) and when well enough to go in to work was able to move downstairs so I don't have to use the stairs, and I can teach from a wheelchair. I've been lucky to have supportive and flexible students and boss :) I have permission to work from home but haven't tried it yet, been feeling more tired for several months now. Main issue with teaching has been brain fog :/

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Oh, I can sympathize with where your son is--I still feel that way sometimes! ^_^ The spectrum of symptom severity varies so widely and can change over time, making it hard to anticipate function ability in the future. I've heard a number of success stories from people who had POTS onset in their teens, though. My own quality of life has improved more than we ever expected.

I was diagnosed about 10 years ago and life looked pretty grim. Just being able to walk around the house without fainting or being able to maintain a conversation were causes for major celebration back then. Getting out of bed was literally a 3-hour process…and then I would collapse on the floor. :( It was hard to imagine ever being able to go to college or support myself. We were able to find some treatment regimens that worked well for me, however, and I developed a lot of symptom-coping strategies, such that I was able to eventually start university part-time (1 course per semester), living at home. I had to develop a lot more symptom-management strategies to function at school, but each year I was able to do a little more, such that I was eventually managed 16 credits one semester and was able to study abroad in Northern Italy and Rwanda on scholarships last summer (really, really thrilling!). I will graduate summa cum laude in May and have received a number awards. It was very, very difficult. I had to deal with major burnout on a number of occasions when I tried to push myself too hard, and so many times I just wanted to crawl under a rock and hide away for the rest of time. Every milestone has been something of a shock, because when I started school, I was fully prepared to just scrape through for 10 years. Nevertheless, it has been rewarding.

How I manage in the working world is my next challenge. I majored in Landscape Architecture, with a minor in Urban Planning & Public policy, not particularly good choices for someone with POTS: hours upon hours spent cutting and recutting models late at night; staring at a computer screen for even more hours trying to learn computer graphics; slogging around in snow for hours doing outdoor site work; lots of public presentations in front of clients (smiling and asking people's opinions go a long way in covering over brain fog issues!)…. Never mind the sound of machinery and power tools on construction sites! Still, in spite of my limitations, I can bring a lot of great qualities to a job. I know that I need to find a place that will allow me some flexibility, because I cannot handle a really fast-paced, high-pressure work environment at this point in my life. The right place will show up on my radar….

My family has been super supportive through the whole process. My parents have been great about not pressuring me to move faster in life; they remember only too well how rough things were early on in the illness, and they have celebrated every little step forward and encouraged me through every big step backwards. If you or your son want to chat about managing college, feel free to contact me!

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i was a nurse and had to give up my career due to fatigue..brain fog..and being on my feet for so long ..and always just feeling ill..was working one day went to the doctor and due to my condition at that time he told me i was done..i am not one of the fortunate ones whose condtion got better mine has deteriorated..since your son is young i hope the best for him.. :)

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Nymph, thank you for sharing too! I think that I might end up going into a different field of education since I love teaching but have such a hard time playing those instruments anymore. My dream job has always been to co-teach preschool :) what do you teach?

And Eillyre, good luck to you!!

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Right now I am working as an elementary assistant, 2nd grade. I could never teach elementary! It's too much energy, paperwork, and organization for me! I plan to teach high school. I'm getting licensed in social studies. However, I love teaching languages. My heart is with Hebrew, but of course there's not a big market for that. I would also enjoy teaching ESL or Spanish. Much depends on whether I end up in a public or private school.

Do you have the energy for preschool? I can't imagine keeping up with them!

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What advice would you give to someone trying to choose a college major? I want to choose something that I will be able to do as a career without being totally burned out. It would need to be a job that lets you sit, but doesn't force you to sit at a hard chair for 8 hour shifts. My strengths include writing/English, math, and science. Thanks.

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I teach middle school math, and have found that my administrators are very understanding. I was in the midst of getting my education to teach when I was diagnosed with POTS, and I specifically remember my neruologist telling me that it wasn't a great idea for me because of POTS. I am pretty stubborn, and I had wanted to teach all of my life, so I was determined to give it a go. I am definitely able to make it work (at least for now).

Teaching is no longer the "stand in front of the class and drone on" type of job as it used to be so I get to sit with students in small groups for most of the class period. When I need to revolve around the room and I'm having POTS problems I just scoot around in my rolly chair. My room is an old science lab so I have a great high lab table in the front of the room with a high stool when I need to give direct instruction or demonstrate the use of mathematical models. In addition, technology has allowed for the use of document cameras to demonstrate math procedures, which allows me to skip standing at a chalkboard (my students actually prefer the document camera because the teacher's body doesn't block the view from certain classroom locations). In the winter I will wear compression stockings because I find them to be rather helpful.

I do come home most nights quite exhausted because standing can't be avoided altogether and the pace can be quite hectic, so I tend to go to bed much earlier than "normal" folks. I also get up much earlier to allow my body a nice "acclaimation" period (I'm sure you all know what I am talking about), but I think of it as my "me" time. I get to watch my favorite shows that were DVR'd the night before and enjoy some coffee before making my body do what it doesn't want to do. Teachers also get to bring work home with them (not all, but a good bit), so that is helpful with respect to the work/family balance when you tend to be spent just from working. I don't want to make it sound like it is all roses, sunshine, and fantastic for a POTSIE.... Unfortunately, during the school year, the hours that I put in vary from 50-80 hours per week (including work done at home), so there isn't much of a life outside of work. From the beginning of the school year through winter break the hours are the longest, and after winter break it seems to ease up a bit. The upside is that about every 3 months you get a nice break (still doing work at home, but more in the couple of hours per day range), and outside of preparing for the next year and attending professional confrerences, the summer is a wonderful time to feel "normal" because I can meet up with friends for a few hours and not have to worry about paying a horrible price later because I can go right back home and lay down if needed.

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HLT, it is great to hear from a teacher. When I was dx'd with POTS in November I was a mess. I had just taught for a week-long practicum and felt terrible. However, now that I have modified my lifestyle with hydration/compression, and know to not push myself to stay on my feet, I am doing a lot better. I have been working as a TA in elementary for the last couple of months. I have been feeling pretty good, and am more convinced than ever that I want to teach. My licensure area will be in secondary so I think that will be physically easier, as well.

Thanks for the encouragement!

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I've been in retail for a couple months which is crazy because I'm on my feet the whole time. I've had a couple days where I feel like I'm about to pass out and my legs get sore but okay otherwise. Before I started feeling better, I was looking for desk job or receptionist job. It's likely that you won't be at your worst for the rest of your life.

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Working and having a body that doesnt do anything abnormal for 36-40 hours a week is very hard with POTS. Sometimes its not so bad but when POTS is bad its a struggle.

Licorice tea basically kept me employed for the first years - now days I take time off and purchase leave so I can.

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I own a small CAD business where I design custom jewelry for retail stores- they give me their ideas, I make them come to life on the computer. Being self employed really has it's pros when having a horrible day. If I ever want to change careers and work for someone else I could use my CAD training at many different types of businesses- If someone is tech savvy or interested in computer work I would highly recommend the Computer Aided Design programs for people who happen to have POTS.

Sadly, I have a degree in Exercise Science with an emphasis in strength and conditioning... obviously not using that degree now! Dreams of being a track coach and personal trainer are long gone!

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I work in a bank. It can be tough because of the AC that's constantly on and I do stand a lot. I only sit when I'm opening accounts. I would like to try and start my own business in grant writing and research marketing so I can have those flexible hours and work at my own pace. I work 10 hour days so when I get home I go right to bed. I have 2 degrees in Marketing and Anthropology. So starting my consulting work in grant writing and research marketing would be great. It's just getting the energy after my day job to do it.

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I am an assistant professor on the tenure track at a comprehensive university. Teaching is more important than research, which is good because I am a geoscientist and lots of field work would be difficult. I got my PhD before the hyperandrenergic POTS was prominent enough to be diagnosed or cause problems, so my ADHD was more of an issue than POTS.

My job is great because I have almost complete flexibility to use whatever hacks I need to in order to work with POTS. I can work with my feet up on my desk, or work from home on non-teaching days. I can teach while seated if I need to. I can choose research projects that I think I will be able to do, physically. All good. And if my POTS hacks look weird, well, professors are expected to be eccentric!

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My son#2 who has H-EDS, NCS, POTS and convulsive syncope since age 17 went to college and became a civil engineer, it took him an extra year to complete the degree but was worth it. He and his wife both passed the Professional Engineers exam this spring. The funniest part is when his wife first met him she had to step over him in the hall while he was still laying on the floor after a syncope event! During college he took the university concrete canoe team to the nationals as the team captain and they placed in the nationals and it was the first time in the University history that they were able to make the nationals. All while having his dysautonomia issues. We worked closely with Dr. Grubb and his office and with a very good exercise program he was some what able to function. Today he works designing environmental projects at his desk but can and does go into the field at times with a stay cool vest, but at the end of each day he still stops by a gym to keep in shape to help overcome the dysautonomia issues along with the H-EDS problems, he also has a previous surgery on his right shoulder after a break and to keep if from dislocating. The right drug combo makes it all work for him.

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